Someone Has To Go Last - The Pink Fund

Someone Has To Go Last

If a tree falls in a forest and no one is around to hear it does it make a sound?

This is a question I have been pondering when thinking about where the patient voice falls on the agenda at a healthcare conference or summit.

As a follow up to my previous post about covering hard costs, transportation and accommodations for patient advocates, and providing an honorarium to those who lived to tell their experience with cancer, making them SME (subject matter experts), I am asking the question, “Why is it that the patient is most often the last speaker on the agenda?” 

I get it, someone has to go LAST. But if the purpose of the conference/summit is a focus on patient centricity, valuing the patient voice, and making the patient the center of all we do, it seems to me the patient story should always be FIRST.

The definition of patient centricity within the health care system reads this way: 'Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family'.

When a conference loaded with healthcare industry SMEs, leaves the patient voice to last on the agenda, then industry does not benefit from what the patient has to say.

I understand  these conferences (for the most part) are produced by for profit entities who procure sponsorships to cover costs, and then charge patients and advocacy groups to attend, exhibit and speak.

I have experienced being invited to speak at conferences, and on several occasions have been placed last on the agenda. And by last, I mean final. And by final I mean the final speaker on the last day of the conference.

Last year, Pink Fund exhibited, and I spoke at a three-day conference.

It was well attended by those in the healthcare industry and independent paid patient advocates, patient navigators, social workers, and patients.

The breakout sessions were loaded with great speakers, providing education and insight, while proposing solutions to industry challenges.

As the final speaker on the main stage, just before noon on a Friday, I saw a room all but empty out as I took the stage. The already slimmed down audience was either hungover from partying the night before or had left to catch flights to get home before the weekend.

I had an impactful video to show and important academic research that would have been valuable to those working in the provider setting around mitigating patients financial burdens when in treatment.

Researching best practices for including patient speakers at medical conferences, I discovered an analysis conducted by THE BMJ regarding patient involvement in health policy that includes four pillars of patient involvement at medical academic medical conferences that advocates and summit hosts should (and I respectfully add MUST) consider:

Accommodation: Consider the medical, nutritional, and accessibility needs and financial assistance with travel and lodging arrangements as practical. For example, include patients in designing a designated physical space such as a wellness room that provides attendees with an area to rest or attend to personal care. Use of social media and free live streaming should be explored to allow participation by patients unable to travel.

Co-design: Patients should be placed on an equal footing with program creators to help identify core conference themes, select speakers, and evaluate abstracts that relate to patient-centered issues.

Engagement: Meaningful numbers of patients should be included in the audience and speaking roles. Patients invited to attend or speak should be able to attend all sessions open to others attending the conference.

Education and mentorship: Medicine X’s program incorporates peer-to-peer mentoring, advice, and presentation coaching, a pre-conference orientation meeting, and post-conference educational and support activities through social media and massive open online courses (MOOC). Education and mentorships enable patients to participate in creating future conferences and are crucial for a long term, sustainable strategy.

While patients may not have the science and research education and experience, they can provide the story line of why industry is working toward better treatment and ultimately a cure.

I am impressed by the 10th anniversary of #PatientsasPartners conference March 20-22 in Washington DC, which opens with a Patient Advocate Keynote delivered by Mandy Gonzalez, Breast Cancer Survivor, and Broadway Star, followed by another advocate Sarah Krug, before the Industry Keynote.

Over the three-day conference, the patient's voice is embedded on every panel and patient keynotes are interspersed with industry experts.

The Conference Forum’s approach nails it and should be adopted by all health conference producers.

And here is why. They took the time to listen and work with patients directly. Valerie Bowling, Executive Director of The Conference Forum and Kate Woda, Conference Director, Patients at Partners wrote:

 “We knew that something drastically had to change and a paradigm shift in how the industry views and works with patients was paramount. We also realized that as researchers, we needed to start with ourselves. We needed to make that paradigm shift in who and how we do our research. With that, eight years ago, for the first time we began to research directly with patients. Getting their feedback changed the way we produce our conferences and, more importantly, how we can affect positive change for patients through our conferences.” 

Unfortunately, I am not able to attend, as I will be on vacation with my family.

But you can be sure I am bookmarking this conference as a MUST ATTEND in 2024. And maybe they will invite me to speak.


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